This week we will likely learn if the Lymphedema Treatment Act has made it into the final legislative package of this year, and this Congress, and what you do or don’t do this week will be a factor in the outcome!
If your members of Congress are already cosponsoring the bill it’s even more important that they continue to hear from you, even daily, because now we need them to fight for the LTA to be included!
We know we’ve asked you to make a lot of phone calls and emails in last few weeks, but we can’t let up now:
- If you are a member of your state’s advocacy team, CLICK HERE
to take action again, no matter how recently you just did
- If you are NOT a member of your state’s advocacy team, CLICK HERE
to take action again, no matter how recently you just did
- If you aren’t sure if you are a member of your state’s advocacy team,
CLICK HERE to contact us and we’ll let you know
Although our focus right now is getting the LTA into a legislative package to be voted on, we are still delighted to be gaining cosponsors. Last week, Senator Perdue signed on to the bill. Although many, many Georgia advocates helped to make that happen, one person in particular has worked exceptionally hard to win his support. Her inspiring story is below.
When I started the Lymphedema Advocacy Group my son with lymphedema was in diapers. This year he started high school. It’s been a long road, but we are so close now. Please join me in making one more push to get the bill across the finish line year by clicking on the appropriate link above. Thank you!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
Persistence and Patience Really Do Pay Off
By: Debbie Labarthe
My personal connection to lymphedema began in 2004, when my grandson, Carson (then 13 months old), was finally diagnosed with primary congenital lymphedema. In September 2004, at age 19 months old, Carson made his first appearance as a patient advocate when we joined other Lighthouse Lymphedema Network members at the GA Capitol to witness Governor Sonny Perdue sign the Proclamation declaring an annual statewide Lymphedema Awareness Day in Georgia. Carson and I also posed for a photo with Governor Sonny Perdue. In 2010, we crossed paths with the fierce lymphedema warrior, Heather Ferguson, when she was a keynote speaker at the annual LLN Conference in Atlanta. Heather shared her vision for national legislation to close the coverage gap on the doctor-prescribed compression supplies for lymphedema patients. She later founded the grass-roots organization, Lymphedema Advocacy Group (LAG), and our paths would cross again ….
In 2016, Carson and I attended our first Lobby Days event with the LAG. We met with the Health Aide for each Georgia Representative and Senator and began to see how the advocacy process works. The majority of the 14 Georgia Representatives did cosponsor the LTA during that Congress, but neither of our two Senators did.
In 2017, we attended Lobby Days to do it all over again. During that trip, Carson and I even had a brief face-to-face chat with Senator Perdue at a constituent event the day after Lobby Days ended. Carson shared with Senator Perdue the highlights of his lifelong journey with lymphedema and the effectiveness he has experienced with the compression supplies which has enabled him to lead a full and active life. He explained the purpose of the LTA and asked Senator Perdue to cosponsor it. Despite our efforts and the Senator’s pledge that he would do whatever he could to help us, he did not cosponsor the LTA during that Congress. This was very frustrating and disappointing for us, but we were determined to keep trying.In 2018, we attended Lobby Days again and had certainly become a little more persistent and confident with each staff member we visited. By October, all 14 Georgia Representatives had cosponsored the LTA. We were so proud of that achievement. However, we remained unsuccessful in gaining the support of either GA Senator. At one point in late 2018, while reading news and viewing photos of events on a social media site maintained by Senator Perdue’s staff, I learned that GA Senator David Perdue and [former] GA Governor Sonny Perdue are cousins!
Well, I decided to dig up that photo of Carson and I posing with Governor Sonny Perdue in 2004! I thought that perhaps Senator Perdue would enjoy knowing that we had met with his cousin at the GA Capitol in 2004 when Carson was just a toddler and a ‘beginner advocate’ for lymphedema patients. The next time I emailed Senator Perdue’s HLA, I included the photo and requested that it be shared with the Senator. The topic of that photo from 2004 would eventually be mentioned again ….
In 2019, my husband joined me for Lobby Days, and he got a taste of the advocacy process. Once again, all 14 Georgia Representatives cosponsored the LTA. And once again, neither of our two Senators cosponsored it. Having gained the support of all 14 Georgia Representatives for the second consecutive Congress session really boosted our confidence and determination. However, we were still disappointed that neither of our GA Senators would support the bill, citing the lack of a CBO score as the primary reason. Yet, our emails and calls continued.
We were unable to attend Lobby Days in the spring of 2020, but I continued with emails and phone calls, usually at least once a month, to the health staff members to encourage their support. As a GA constituent, I was also able to participate in a telephone webinar with Senator Perdue this summer, which was coordinated by Heather Ferguson and Capitol Counsel. I reiterated to him again the importance and rationale of the LTA, then followed up with a few more emails to his Health Aide.
Since 2016, there has been lots of emails (over 50 to Perdue’s office alone), lots of phone calls (I’ve lost track), as well as feelings of confidence and success, and times of frustration. But we never gave up! We just became more driven and motivated each year. Heather and her team kinda do that to you. Anyone who has advocated with Heather and her team know this!
The payoff for our perseverance finally came on November 30th, when I received the email from Senator Perdue’s Health Aide, stating that he would be cosponsoring the LTA and would be sure to continue advocating for its inclusion in a spending package by the end of this Congress.
When I sent a ‘thank you’ email to Senator Perdue’s Health Aide, I stated how wonderful it was to receive the news of his decision. I mentioned that we had looked forward to that news since 2016. And the Health Aide’s reply to my email went like this: “I would say it goes even further back with Carson’s picture with Sonny (which I believe was in 2004?)! I have showed that photo to Senator Perdue many times to remind him of those back home struggling with lymphedema.”
This odyssey made us feel that our persistence and patience truly paid off!
